INTRODUCE YOURSELF

This is a place where parents can interact and gain support for medical, emotional and ongoing issues with School.

Moderators: Mike Bartolatz, kwork

Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Re: INTRODUCE YOURSELF

Post by Mike Bartolatz »

http://p075.ezboard.com/fuveitissupportmeeifrm6

direct link to the Parents forum of http://www.uosg.org

I sent an email to Renee' who I hope will respond to you here as well as greet you at the parent's forum over there.

wishing you the very best,
Mike Bartolatz
Mike Bartolatz
Moderator
schizinsky
Posts: 3
Joined: Fri Apr 03, 2009 12:14 pm

Re: INTRODUCE YOURSELF

Post by schizinsky »

Thanks, Mike. We have been very happy with Dr. Foster. The situation is just so draining, and my daughter has been through so much.

I'm not familiar with the Orphan Drug list; I looked into a bit, but it's not yet clear to me how it would apply. I'll have to do more research.

Thanks for the welcome and for the kind words.

Sandy
Mike Bartolatz
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Joined: Fri Feb 06, 2004 9:58 pm

Re: INTRODUCE YOURSELF

Post by Mike Bartolatz »

because uveitis is so rare, the FDA developed this list to allow doctors like DR Foster to use the drug on people even though it isn't 'approved' for the use in uveitis. there are lots of medical journal articles that indicate that Remicade, Humira and other drugs work well to conquer uveitis of various types. no drugs other than pred forte and durezol are approved by the way yet many are covered by drug insurance. things like methotrexate, cellcept, azathirapine, chorambucil etc are used all the time and they pay for coverage. the problem is man are not meant to be used in children. even oral corticosteroids have major developmental issues in kids and have to be limited so drugs like remicade and humira are used.
somewhere I have an article where Humira and remicade are approved for JIA. your child was treated for a very serious condition and there might be a link to the pathogen that caused it but only time can tell.

as an aside as a five year old child, I was hospitalized in a coma from very high fevers from something they thought was meningitis (back in about 1954). eventually the fever broke and I woke up and they sent me home. afterewards I had an 'eye problem' for which I never found the reason as I didn't know until after my parents died that things like this could be related, it might have been that I had uveitis because I remember my mom telling me as a teenager that the doctors said I could lose my vision from the eye condition. I did have allot of floaters growing up and had difficulty in Science classes looking through a microscope as all the stuff would float down over my field of vision making it very difficult to see stuff.
I was told that 'floaters are common' but I now know that unless you have severe myopia, this isn't normal in a kid so I should have been under the care of an opthalmolgist. then at about 15 or sixteen I had another bout of iritis and took corticosteroids but life was hell at school as everything was written in chalk on a blackboard. unless the blackboard was very clean, it was almost impossible for me to read.

have you been given the Pamphlets developed by Dr Foster and the support group?
links to online copies that you can print out are available in this forum. the first is Uveitis: a Guide for Teachers and Parents, the other is Ocular inflammatory disease for all ages.
the first one has information on legal issues which require schools grades 1 - 12 to make necessary accomodation for kids with disabilities. Uveitis qualifies. DR Sharon Ray is an Expert back in Boston at TUFTs university and servers as a facilitator at the online support group back in Cambridge. she can answer questions if you need help. she originally came here and I sent her to Dr Foster and when I found out her background and talked with her she agreed to help out with the Parent's forum.

Did Csf give you his email address? he can be contacted privately for comment this way. he doesn't want his patients to pose questions at his online website at ASK THE DOCTOR.
FYI his site is http://www.uveitis.org which links to his http://www.uosg.org and http://www.parsplanitis.org sites where I am a modertor too.

Talk to Frances Foster, she can help with the drug issues for your child. I know that CSF and Frances have been able to get approval for allot of kids and if help is needed, they have the contact information available for the various drug companies to apply for help with the drug. it is very expensive at over 2, 000 dollars a month but in some, it is all that really works.

Wishing you the very best,
Mike
Mike Bartolatz
Moderator
schizinsky
Posts: 3
Joined: Fri Apr 03, 2009 12:14 pm

Re: INTRODUCE YOURSELF

Post by schizinsky »

Thanks for explaining about the Orphan Drugs. I will find out next time we see Dr. Foster (or before) what steps we should take with the insurance company.

The story about your fevers was very interesting. When Liza had ADEM, we had a devil of a time even getting a diagnosis; she was only hospitalized for ten days, but she was ill for somewhere between three and six months before that---we just didn't know it (she had severe flu, seemed to recover, then developed mysterious headaches---diagnosed as migraines---about four months later). When she was in the hospital, everyone tried eights ways to Sunday to figure out the link between the brain inflammation and the uveitis: two inflammatory conditions in the same kid within the same period---how could they not be related? But no one could turn up the link. We just thank God she got through the ADEM; we didn't know what was going to happen.

I don't have the pamphlets, but I've gotten lots of information from Dr. Foster's office and other resources over the years, so I feel pretty comfortable. Dr. Foster is very good about responding when I write to him directly. We finally got the school to understand that Liza needed accommodations. She'll be out of high school in June, and will go to college next year. I'm concerned about that because I don't know how it will mix with whatever medication regimen she's on. But we'll cross that bridge when we come to it.

Thanks again. I feel better just talking about it.

Sandy
Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Re: INTRODUCE YOURSELF

Post by Mike Bartolatz »

Sandy,
yes getting some of this stuff off you chest helps allot. I know that Renee and others will help you out at the parent's forum of Doctor Foster too. Renee's daughter Alexa is the Moderator at the KIDS forum at the UOSG site so she could explain stuff to your daughter if she would like to Join. it is a CLOSED forum where permission has to be granted for access by Liz or Dr Foster to protect the kids from any predators out there on the Web.
if your daughter would like to join her or at the other site, I'd be happy to help her through 'issues' as I have been through allot with all of this myself. I do my support work so people can learn about their disease processes so that they can make informed decisions about their care. I do it so that others won't end up like me too. there wasn't anything on the internet or anywhere for that matter for many years until Dr Foster developed his site and then the support groups started showing up. information can be trusted at his site and here too because I make sure that garbage isn't put on the site.

wishing you the very best,
Mike Bartolatz
Mike Bartolatz
Moderator
Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Re: INTRODUCE YOURSELF

Post by Mike Bartolatz »

viewtopic.php?f=8&t=2454

here is an article on uveitis in childhoon treated with the BRMS with results of treatment for each Drug. it is a small sample but I think it reflects how good they work. note that it is in the British Journal of Medicine.

mike
Mike Bartolatz
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rtaunton
Posts: 40
Joined: Fri Jul 09, 2004 7:53 pm

Re: INTRODUCE YOURSELF

Post by rtaunton »

Hi Sandy,

You and your daughter have been through the ringer. When it comes to fighting the insurance, I would definitely ask Frances to help you. It can be so complicated if you don't have any help. The office at MERSI have helped so many in this regard.

My daughter would love to see more teenagers chatting in the kids' club at the uosg.org site. I hope she does come over. How are you doing? I think the fight with finances is probably one of the more exhausting aspects of fighting uveitis. The key is to not give up. I can remember being so angry with our insurance company, and not get anywhere with them. Then my husband would call, and he would turn on the charm. Next thing I knew he was talking to the person I have been trying to talk to for weeks, and explaining that our state does not have an Occular Immunologist. Dr. Foster is not only that, but an Ophthalmologist, Rheumatologist and cornea specialist. He managed to get that years worth of visits covered at a percentage. However, the next year we had to fight the same fight again, and it wasn't as easy. Sometimes it just doesn't make any sense.


My daughter was on infused meds for the last 4 years, and is now all off medications except xibrom. If I can help in anyway, even if it is just to talk things out, let me know.

Renee'
Renee'
Oregon
Mike Bartolatz
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Joined: Fri Feb 06, 2004 9:58 pm

Re: INTRODUCE YOURSELF

Post by Mike Bartolatz »

please contact DR Foster at his private email s foster @ mersi.us ( no spaces.) he can then have Frances help you with the meds issue.

mike
Mike Bartolatz
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